What the heck is that? My thoughts exactly. It is a rare vascular disorder and as many of you probably know by now, our little Micaila has it. I will try to give you the abridged version of events.
Last Monday Micaila came to me and asked me “Mommy, what is this all over my leg?” I looked at it and immediately thought it was more than likely some sort of contact rash.
I did my research and consulting and came to the conclusion that it must be poison ivy. This would be my first experience with poison ivy so what followed, I assumed, was “normal”. Her little feet and legs were swollen, red, and rashy. She couldn’t walk and said they itched. A few days went by and the rash started to lighten up but she still complained of her legs hurting and now her stomach as well. At this point I thought she was just milking every bit of sympathy from me that she could get. Her appetite decreased, which obviously meant she was manipulating the situation to get ice cream, right? Well I wasn’t giving in, no ice cream for you! She wouldn’t eat, she was tired all the time, her head hurt, her stomach hurt, everything hurt! All the while I’m telling her “If you’d eat you’d feel better!” By the time Friday rolled around and she hadn’t slept at all the night before. I thought “Maybe something IS wrong with her stomach?” Bladder infection? Constipation? So we went in to the pediatrician.
Henoch (HE-nawk) Schonlein (Shurn-line) Purpura. HSP. They explained it a bit to me, gave us some steroids and said they’d want to see her again Tuesday. “Watch out for things like fever, vomiting, and drink lots of fluids!” “okie dokie” I thought. We get home and before I could give Micaila her medicine she threw up all her yogurt she had just eaten, all over me while I was nursing Caleb, mind you. This is when panic mode sets in.
My daughter is diagnosed with some weird named, rare disorder, involving blood. She hasn’t eaten in a few days and now shes puking. I finally figured out who to get in touch with “after hours” and at about 9:00 pm Micaila and I were heading to Scottish Rite in Atlanta. While my dad (Dr. White) 😉 was assuring me there are RARELY complications with HSP I still was a little freaked out. I knew I needed to cast my cares on Him. I knew I could trust Him because He loves Micaila infinitely more than I do. But in all honesty, I haven’t exercised my faith in this way, in awhile….. or maybe even ever.
We got to Scottish Rite around 10:00pm and I must say, that place is efficient. They took good care of us and had us in a room in no time.
Micaila would not get on the bed. I guess that made it too official for her.
When we finally met with the doctor she set our minds at ease. “Classic signs of HSP.” She gave Micaila a dose of zofran (an anti nausea medicine) and recommended we avoid using the steroid because it could upset her stomach more. “Drink lots of fluids and don’t worry about the food.” Again, told me to watch for vomiting, abdominal pain, dehydration ect. And we were on our way. Got home around 1:00am and tried to some sleep after our eventful night.
Saturday went well, Micaila seemed perkier and we just took it easy all day. Still having to persuade her to eat Popsicle’s here. That’s when you know somethings not right.
Saturday night I don’t know if she slept at all. She kept saying “my tummy hurts”. Sunday morning she looked awful and at 10:00am she threw up again, this time with a little blood in it. Here we go again. Made my phone calls and because it is a blood disorder the fact that she had blood in her vomit concerned them. So we drove back to the hospital.
Talk about an emotional roller coaster.
Once again I went to God in prayer, in song, and just tried to find my peace and strength in Him. While driving along on 75, wondering if my baby is bleeding internally, the song “In Christ Alone” started playing. That was not by accident.
In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand
Again, we arrived at the hospital and were well taken care of. This time she got a tiny little gown. Still refusing to lay in the bed.
I finally convinced her to get in the bed.
The doctor came in and assured me that all her symptoms are normal. To expect little to no appetite, weight loss, nausea, occasional vomiting, joint pain, the rash, ect. And to be aware that it can last anywhere from 2-6 months. (What? Your kidding.) It may go away and then flare back up but eventually it should go away altogether. This doctor did a very good job at informing me with all the REALLY important info on HSP. There are rarely complications with this disorder, but they still have to be cautious since its involving blood and can also effect your kidneys. Which is why they kept sending us back to Scottish Rite.
In hindsight I can look and say “She’s going to be fine. Of course I should not have worried.” But in the moment, when the unknown is overwhelming your thoughts, it’s scary!
Today we had a follow up with the Pediatrician. She encouraged us to use the steroids. The joint pain is so bad at points Micaila can hardly walk or use her hands. So she had her first dose today and seems a lot better. Now of course steroids are used TO relieve symptoms so we will see how her body does when she isn’t taking them.
We appreciate ALL the prayers and support. It’s been quite a week! Micaila may have a tough few weeks ahead of her, maybe even months. But as we have continued to remind her, God is good. He is good in ALL things. Life does not always go how we thought it would or should. We live in a broken world and as a result, we will experience some unpleasant things while we are here.
John 16:33 I’ve said these things to you so that you will have peace in me. In the world you will have distress. But be encouraged! I have conquered the world.
We trust Him and want our response to life, including trials we face, to reflect our faith in a loving, gracious God.
It’s been a great opportunity for us to instill in Micaila the importance of prayer, trust, and not being afraid. And also to remind ourselves of all those things.
Like I said it’s been a whirl wind weekend. And this blog is a reflection of that I’m sure. So for now, I will end this post with Micaila’s memory verse from the week leading up to all this.
1 Thessalonians 5:16-18 Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.